Researcher perspectives on ethics considerations in epigenetics: an international survey

Area of Science:

• Epigenetics and its societal implications.
• Ethical, Legal, and Social Issues (ELSI) in scientific research.

Background:

• Growing interest in the societal impact of epigenetic research and technologies.
• Existing literature highlights opportunities and ELSI.
• This study investigates epigenetic researchers' perspectives on these discussions.

Purpose of the Study:

• To explore epigenetic researchers' views on the scope of their field.
• To understand their perspectives on ELSI in research and knowledge translation.
• To assess concerns regarding non-medical applications of epigenetic testing.

Main Methods:

• Online survey conducted from January to March 2020.
• 189 epigenetic researchers from 31 countries participated.
• Questionnaires covered field scope, specialization opportunities, ELSI, and concerns about non-medical applications.

Main Results:

• Strong consensus on DNA methylation, histone modifications, and chromatin structure as core epigenetic elements.
• Disagreement noted regarding transcription factors, RNA interference, RNA splicing, and prions.
• Prevalent ELSI concerns included data access and media communication of findings.
• High concern levels were expressed regarding non-medical applications like life insurance, forensics, immigration, and direct-to-consumer testing.

Conclusions:

• Epigenetic researchers have varying views on the precise boundaries of their field.
• Significant ELSI challenges exist in data sharing and public communication.
• Researchers share substantial concerns about the ethical implications of non-medical epigenetic testing applications.